Brain stem issues anyone? Or could it be cervical instability?

[Cinders66]

Hi

I know that there’s some suggestion from research of brain stem dysfunction. I’ve been hearing that “suggested” for many years but I don’t think we Are there yet. Now we hear about some severely ill having cervical spine issues.

Basically for me personally I feel I have neurologically a devastating hole at the top of my neck /base of my head which is where my weakness/sensory sensitivities/extreme exhaustion and poisoned feeling etc are largely coming from (I do experience extreme muscle fatigue too) . It feels like a catastrophic wound,m just as if you had a gun shot that would be the bit of you damaged, limiting you and causing symptoms.

I’m bedridden and have recently worsened again to a level of several years ago, before I was following the research , where I was constantly reporting this symptom. Now I’m more familiar with the research I’m wondering do other severely affected experience this phenomenon and also is it Most suggestive of brain stem issues or could it be related to this cervical instability issue I’ve been hearing about but don’t really understand.
Afaik I don’t have symptoms outside the m.e spectrum and I’m in the UK and too Ill to go to hospital But I do have neck issues

 

[SuhasSN]

@Cinders66
Yes Your symptoms do sound like Cervical instability , I think you should carry on investigation for it
Do you have POTS , Dysautonomia ,Severe Fatigue and PEM?

 

[JES]

Basically for me personally I feel I have neurologically a devastating hole at the top of my neck /base of my head which is where my weakness/sensory sensitivities/extreme exhaustion and poisoned feeling etc are largely coming from (I do experience extreme muscle fatigue too) . It feels like a catastrophic wound,m just as if you had a gun shot that would be the bit of you damaged, limiting you and causing symptoms.

Interesting description. To me it doesn't sound like typical brainstem compression symptoms, or in the wider context, cervical medullary syndrome. The symptoms of cervical medullary syndrome listed here are:

• headache
• dysautonomia, Postural orthostatic tachycardia syndrome
• pain, numbness, weakness and sensory loss
• apnea
• altered vision (blurring, floaters, spots, scintillation, auras are unusual)
• problems with hearing, tinnitus, “As a group, [patients] appear to have a higher incidence of sinusitis/otitis and miringotomy tube placement in childhood." [2]
• problems with balance, vertigo, dizziness; longstanding clumsiness; disorientation in vehicles or with movement, e.g., escalators or walking down store aisles
• altered sleep architecture
• problems with swallowing, speech

 

[Cinders66]

Thanks for your replies and Information

@Cinders66
Yes Your symptoms do sound like Cervical instability , I think you should carry on investigation for it
Do you have POTS , Dysautonomia ,Severe Fatigue and PEM?

I don’t know about pots as I can’t do the tests. I do have tachardia, numbness sensory, apnea, vision problems, tinnitus, speech Issues etc but that’s not atypical for very severe m.e either afaik.

 

[Rufous McKinney]

Basically for me personally I feel I have neurologically a devastating hole at the top of my neck /base of my head which is where my weakness/sensory sensitivities/extreme exhaustion and poisoned feeling etc are largely coming from (I do experience extreme muscle fatigue too) .

Me too. Its like its centered and radiates: from this location..its felt like that here for about 20 years and I wanted the 20/20 Operation...in the 1990.s

This feeling is doing a little better lately when I went on a lymph cleanse- I seem to have less pressure there for the timebeing. Nice. Thank you.